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The Art
of Conversation
in Cancer Care
Lessons for Caregivers
Second Edition
R IC HA R D P. M C QU E L L O N , P H D
Comprehensive Cancer Center Wake Forest Baptist Health
M IC HA E L A . C OWA N , P H D
Loyola University New Orleans
1
3
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Library of Congress Cataloging-in-Publication Data
Names: McQuellon, Richard P., 1949–author. | Cowan, Michael A., author.
Title: The art of conversation in cancer care : lessons for caregivers /
Richard P. McQuellon and Michael A. Cowan.
Other titles: Art of conversation through serious illness.
Description: 2 Edition. | New York, NY : Oxford University Press, [2022] |
Revised edition of The art of conversation through serious illness, 2010. |
Includes bibliographical references and index. |
Identifiers: LCCN 2021024170 (print) | LCCN 2021024z171 (ebook) |
ISBN 9780197500293 (paperback) | ISBN 9780197500316 (epub) |
ISBN 9780197500323 (Digital-Online)
Subjects: LCSH: Terminal care—Psychological aspects. | Death—Psychological aspects. |
Terminally ill—Psychology. | Critically ill—Psychology. | Caregivers—Psychology.
Classification: LCC BF 789.D4 M377 2021 (print) |
LCC BF 789.D4 (ebook) | DDC 155.9/37—dc23
LC record available at https://lccn.loc.gov/2021024170
LC ebook record available at https://lccn.loc.gov/2021024171
DOI: 10.1093/med/9780197500293.001.0001
This material is not intended to be, and should not be considered, a substitute for medical or
other professional advice. Treatment for the conditions described in this material is highly
dependent on the individual circumstances. And, while this material is designed to offer
accurate information with respect to the subject matter covered and to be current as of the
time it was written, research and knowledge about medical and health issues is constantly
evolving and dose schedules for medications are being revised continually, with new side
effects recognized and accounted for regularly. Readers must therefore always check the
product information and clinical procedures with the most up-to-date published product
information and data sheets provided by the manufacturers and the most recent codes of
conduct and safety regulation. The publisher and the authors make no representations or
warranties to readers, express or implied, as to the accuracy or completeness of this material.
Without limiting the foregoing, the publisher and the authors make no representations or
warranties as to the accuracy or efficacy of the drug dosages mentioned in the material. The
authors and the publisher do not accept, and expressly disclaim, any responsibility for any
liability, loss, or risk that may be claimed or incurred as a consequence of the use and/or
application of any of the contents of this material.
1 3 5 7 9 8 6 4 2
Printed by Marquis, Canada
To the staff and volunteers of the Cancer Patient Support Program
Comprehensive Cancer Center
Wake Forest University Baptist Medical Center Winston-Salem,
North Carolina
To our mothers: Kathleen McQuellon and Marie Cowan
To our wives: Cyndee and Kathleen
To our children: Meghan, Brendan, Kristin, Katrin, Mairin, Kendall,
and Rebecca
To our patients: They taught us how to walk together with courage in
mortal time.
In memory of Caleb Atticus Christensen-Cowan, beloved of God.
Contents
Acknowledgments ix
Prologue xiii
Introduction 1
Part I. The Many Meanings of Mortal Time 15
Part II. Hope from Conversation 47
Part III. Guidance for Caregivers 97
Index 133
Acknowledgments
The Comprehensive Cancer Center of Wake Forest University
Baptist Health (WFBH) has provided the primary stage for
encountering mortal time. Within the cancer center, the
Psychosocial Oncology and Cancer Patient Support Programs
(CPSP) have been designed to reduce the suffering of patients and
their loved ones during diagnosis treatment, and survivorship. The
CPSP consists of six staff members and many weekly volunteers.
Dozens of Winston Salem community members organize an an-
nual fundraiser for the program, called the Winterlark.
The loyal clinic volunteers, past and present, provide healing
conversation, listen and serve cancer patients and loved ones in
our radiation, and medical oncology clinics. Thank you current
volunteers: Judy Ditmore, Ronnie Flowers, Linda Gitter, Jerry
Gray, Hermine and Bob Heller, Ray Joyner, Roger Jordan, Trinette
Kirkman, Joyce Lindberg, May Merlau, Cathy Mills, Kris Morris,
Cynthia Robertson and Pat Stoeber.
Thank you to Marian and Jimmy Douglas, Ann and Borden
Hanes and Lynn and Jeff Young who have supported the work of
the CPSP over the decades. The program would not be thriving
without them.
I deeply appreciate the daily work of the CPSP staff, making a
difference: Dr. Katie Duckworth, Andrea Edwards, Stephanie
Lichiello, Dr. Ruth Moskop, Victoria O’Connor, Dr. Lisa Rainwater,
and Aimee Tolbert. Dr. Rainwater provided valuable insight re-
garding the needs of caregivers.
The work of the office of Philanthropy and Alumni affairs guides
the CPSP fundraising efforts. Thank you Carolyn Beckman, Allison
x Acknowledgments
Brouillette, Cindy Caines, Lisa Marshall, Jennifer Woodward
and all the Winterlark chairs and volunteers who helped sustain
our CPSP.
It is an honor to work alongside the nurses, physicians,
physician’s assistants, chaplains, social workers, counselors,
speech, physical and occupational therapists and other health-care
professionals who strive to reduce suffering and promote healing
every day. They are practitioners of the art of conversation in cancer
care: Drs. Mebs Aklilu, Katharine Ansley, Angela Alistair, Bill
Applegate, Christine Bishop, William Blackstock, Dale Browne,
Tom Dubose, Leslie Ellis, Andrew Farland, Carolyn Ferree, Stefan
Grant, Carl Grey, Diana Howard, David Hurd, Heidi Klepin, Glenn
Lesser, Denise Levitan, Ed Levine, Thomas Lycan, Nelson May,
Michael McCormack, Susan Melin, Tony Miller, Pat Ober, Richard
Patterson, Jeff Petty, Bayard Powell, Caio Rocha Lima, Paul Savage,
Mary Beth Seegars, Perry Shen, Alexandra Thomas, Chris Thomas,
George Yacoub; Susan Lyerly, PA-C, Rebecca Murray, PA-C, Nathan
Ogilvie, PA-C, and Kate Winterbottom, MS, CCC-SLP.
I am grateful to:
• Jay Foster, D. Div. Jay provided faithful companionship and
soul sustenance on the journey.
• Drs. Boris Pasche and Steven Sorscher who read a draft of the
introduction and shared their valuable insight about changes
in cancer medicine.
• Dr. Peter Lichstein. He has inspired clinicians at Wake Forest
Baptist Health with the Program to Enhance Relationship-
Centered Communication (PERCC). Its purpose to train
health care providers in- patient centered communication
skills. Dr. Lichstein is an expert in the art of conversation in
mortal time.
Many friends, family, students, and colleagues have contributed
to this book directly and indirectly including reading earlier
Acknowledgments xi
drafts and offering useful comments. Fr. Richard Chiles, Dr. Mary
DeShazer, Cyndee McQuellon, Kathy and Dr. Jerry McShane,
Cassie Campbell, Sue Stewart, Barry Maine, Jared Rejeski, Linda
Gitter, and Hy and Loretta Muss, all provided helpful insight.
Hundreds of people over the years have entered the chaotic world
of Cancerland with grace and courage. Thank you to the following
for showing the way: Trish Barron and Nathan Berolzheimer,
Maggie Brilhart, Drs. Greg Holmes and Katherine Roth, Lynn
Felder, Bill and Linda Garwood, Nell M., Kathleen and Robert
Niles, Dennis and Sandy O’Hara, Patrice Radke, Pam and Mark
Rabil and Bob Stone. Their courage and humor while confronting
serious illness continues to inspire.
Wake Forest Baptist Health is fortunate to have an outstanding
medical school dean and CEO in Dr. Julie Freischlag who is dedi-
cated to sustaining our patient promise, including patient-centered
medical care. Her extraordinary leadership of WFBH makes it all
possible.
Finally, the following endowed funds supported this project: The
Herbert and Ann Brenner Fund for Cancer Patients; The Kathryn
A. Millward Fund; The Barbara D. Smitherman Memorial Trust;
The Bertha Long CPSP Fund; The Higgenbotham Memorial
CPSP Fund, the Belk-Glenn Fund for Cancer Patients, The Mary
B. Driscoll Memorial Fund, and The Earline Health King Fund for
cancer patients. Their foresight and generosity provided the re-
sources to write this book.
RPM
Prologue
The Second Music
by Annie Lighthart
Now I understand that there are two melodies playing,
one below the other, one easier to hear, the other
lower, steady, perhaps more faithful for being less heard
yet always present.
When all other things seem lively and real,
this one fades. Yet the notes of it
touch as gently as fingertips, as the sound
of the names laid over each child at birth.
I want to stay in that music without striving or cover.
If the truth of our lives is what it is playing,
the telling is so soft
that this mortal time, this irrevocable change,
becomes beautiful. I stop and stop again
to hear the second music.
I hear the children in the yard, a train, then birds.
All this is in it and will be gone. I set my ear to it as I would to a heart.
“The Second Music” by Annie Lighthart from Iron String © Airlie Press, 2015. Reprinted
with permission.
Introduction
Birth and Ultimate Possibility
A profound but rarely considered reality is that the moment of our
birth promises the inevitability of our death.1 We enter mortal time
when we are born. Youth, with its promise, rarely considers this,
whereas the elderly may be all too aware of it. In this book, we con-
sider the experience of facing life-threatening illness, when the
prospect of ending becomes all too real. At one extreme, mortality
can be trivialized by offhand comments such as “We all have to go
sometime.” At the other extreme, it can provoke morbid preoccu-
pation. In these pages, we navigate between the extremes of oblivi-
ousness and obsession, providing guidance for those who would be
engaged companions in mortal time. Here, Mary’s story illustrates
the complex forces that come to bear on a particular encounter
with mortality, when illness appears incurable.
When Mary’s physician told her that her breast cancer had
returned and spread to her lungs and liver, her calm reaction
took him by surprise. The young physician in training felt that
Mary didn’t understand the seriousness of her predicament.
When I spoke with Mary in consultation, she was sitting at the
bedside in some discomfort but managing her pain reasonably
well. She understood that her cancer had now moved to her
liver and lungs and that it was not curable. She said that her
main physician was “the man upstairs,” but she also believed
2 The Art of Conversation in Cancer Care
that “God works through people like you and the doctors and
nurses.” She further stated that she trusted her doctors and
relied on their input. However, she was in the hands of God,
who would be the ultimate physician in her case. She was dig-
nified, humble, and unafraid of talking about what might lie
ahead for her. She had buried her father and cared for a brother
disabled by a stroke within the past year. She had grown fa-
miliar with the possibility of dying. Her caring physician was
not critical of her but, rather, puzzled by what seemed to be her
“denial” of her situation. She was prepared to discuss the limits
to her life, yet hopeful that she would be touched with a mir-
acle. For her, this was not denial but, rather, a deep faith in the
future, whatever it held.
Mary was calm in the face of her diagnosis, her physician was
puzzled by her response to life-threatening information, and the
consulting psychologist was struck by their differing responses.
This incident highlights the power of death’s multiple meanings to
shape feelings and behavior. Although only one person in this story
faces grave illness, all three—the patient, her physician, and the
consultant—are facing the reality of living with death’s possibility.
Mortality has a different meaning for each of them, as it does for
everyone it touches. These meanings color how people feel, think,
and communicate as they turn to face mortality together.
Living with Mortality
This book is about living gracefully with the possibility of death,
whether it is on the doorstep or in the unforeseeable future. We
are professional caregivers, but we have written this book with a
particular concern for friends and family who are accompanying
loved ones during the diagnosis and treatment of a life-threatening,
Introduction 3
life-changing illness such as cancer. We use the phrase “mortal
time” to capture the experience of being acutely aware of one’s own
mortality rather than to describe a particular period. Although we
all are set into mortal time from birth, illness can call mortality into
sharp focus. We use the term “life-threatening” in these pages to
refer to situations in which a person believes that their illness could
shorten their natural life span in the immediate or more distant
future.
Receiving a life-threatening diagnosis can be profoundly dis-
turbing. Author Michael Lerner has likened receiving a cancer
diagnosis to being dropped into a jungle with no survival skills
or tools.2 Often without warning, the patient, family, and friends
find themselves on alien, anxiety-provoking ground. Here, we
provide map and compass for those facing mortality directly or as
companions of loved ones facing territory that is inherently fright-
ening. We offer reflections on the momentous rite of passage that
we call mortal time through real-life stories and possible answers
to questions that people may have when moving into mortal time.
We consider how one can listen carefully and respond thoughtfully
when facing cancer.
Our purpose in writing this book is to encourage frank, life-
affirming conversation for those facing the prospect of death. We
offer a philosophy of “how to be” in mortal time rather than a pre-
scription for “what to do” there, although we do offer concrete
suggestions for conversation. Death is not unspeakable and need
not be avoided until the “last minute,” when a precious life is ebbing
quickly and opportunities for dialogue may be dramatically lim-
ited. In fact, embracing mortality honestly and compassionately can
open the hearts of family members, friends, and other caregivers to
speak of life in all its richness and promise. These conversations call
for sensitivity and courage.
Dying is part of living and needs to be “talkable.” In the American
culture famous for collective denial of death, this means going
against the grain. We do not advocate morbid preoccupation with
